Warning - long reply. But as you know, Linda - I've been there (and still am there).
Linda, Dr K, my former (now retired) wonderful specialist used to worry (unnecessarily) about my amount of pain medications too. At one time he referred me to a rehab specialist and in his referral letter (which I read upside down on the rehab doctor's desk) he said he was concerned about my addiction to opiates. I was really angry when I read that, because I had been where you are now, had made enquiries and had worked through it. And now my doctor was kicking up a fuss over what I thought was now a non-issue!
The rehab doctor had other concerns but still put me in hospital. I actually had to go in under Dr K because the rehab bloke didn't have any spare beds. Dr K was determined to get me assessed re addiction, but that issue got tossed out on the first day or so I was in. A non-issue, as I'd told him. The next three weeks were spent checking out other things.
Now, the ward I was on happened to be an AIDS ward and was loaded heavily with addicts, hookers etc. ALL medications were closely supervised and it felt weird to me to have to take my strong opiates and open my mouth afterwards so they could check I'd swallowed them. But hey, they were just doing their job. My medications at the time were a 12 hour sustained release morphine, plus a paracetamol/codeine mix as needed.
One thing I had to do while there - have an IVP. This required taking purgatives etc so the X-rays wouldn't be fogged by bowel shadows, etc. Now, a problem with purgatives is, my 12 hour medications would get swept out of my system so fast they wouldn't having time to work. And the side effects of suddenly not having morphine on board - diarrhoea. Which speeds up the loss of medications, which makes the diarrhoea worse, etc.
So when I had to take the purgatives, I refused my morphine. The nurses were NOT happy with me, but I said, "There's no point."
So I spent most of the day in a lot of pain, but I don't think I was in any more pain than I would have been anyway, thanks to the purgative. Then I had the test. The diarrhoea finally subsided. I asked for my morphine at last, at 3 pm.
"It's not due until 9 pm tonight," they said.
"But I didn't have any this morning," I said. "So technically, it's already 6 hours overdue. I just won't take any at 9 pm, then I'll take it at 9 am in the morning as usual."
They just couldn't wrap their tiny little brain cells around this, considering I was on a ward populated mostly by addicts. I probably could have talked them around but I didn't have to. As it turned out, the IVP results arrived and a copy was put into a letter. I was finally discharged and as husband drove me home I took my morphine. At 4 pm.
I guess what I'm trying to say - opiates, managed well, can make your life much easier, not harder. There are ways to make sure that what you do stays in the realm of good medical care and doesn't stray into addiction.
I take morphine. It's in sustained release form. I also take the paracetamol and codeine mix as needed through the day for breakthrough pain. All of this is supervised by a pain specialist, who sees me every few months and authorises my GP to write the prescriptions. These have to be authority scripts, which means that the doctor has to telephone a central federal authority each time she writes me one of these. She gives them the prescription number and her registration number; they give her an authority number which is kept on file in her rooms and also written on the prescription. It's all closely monitored. I can only get enough from her for a month, and I can't go to another doctor for it all, it's all monitored. I also can't go back in a week for another month's supply, it's blocked until 3 and a half weeks. If I lose a prescription she can ring up and write me another one, but if the records show I'm getting careless, the central computer will flag it and send a "please explain" letter to the doctor. That has never happened with me, of course.
I started out taking the paracetamol & codeine mix back when this pain first started, 24 years ago. At the time it was episodic so when I wasn't in pain I didn't take the painkillers. Paracetamol on its own wasn't enough; codeine on its own wasn't enough. Paracetamol potentiates opiates and vice versa. So does aspirin, but I can't take it. You may find that if you take the opiates, any breakthrough pain can easily be dealt with by taking paracetamol instead of more opiate.
Then it went chronic and pain increased. various doctors tried different things, but I am here where I am after all these efforts. This is what works for me.
Some people can't tolerate opiates and I am sorry for them. mother in law can't take them at all, can't even take codeine or pethidine. She had open heart surgery, and nothing stronger than paracetamol was permitted. Some idiot gave her pethidine and she was so ill she had to stay in hospital another 8 weeks.
husband & I were once watching a documentary on how they manage pain in Britain - with heroin. There, end-stage cancer patients are able to go home and be productive right up until their last days, because when the opiate dose is matched to the pain level, you get practically no side effects. No 'high', no sedation (or very little), just the pain relief.
And this is what I find. When I was first given morphine I think the dose was too strong. It sedated me a bit, I felt that odd, unpleasant (to me) sensation in my throat that is my muscles being so relaxed they've gone flabby. I found it didn't last for more than a few weeks. If I'd realised, I would have asked the doctor for a lower dose.
I was taking 30 mg twice a day back then. This was MS Contin, the 30 mg is a purple pill.
Then I developed a rash (after a few years). After doing some careful elimination, I worked out that it was the purple colouring in the MS Contin. The doctor gave me 10 mg tabs instead, I had to take 3. These were yellow and had an oily taste. They also tended to hit a little hard and then wear off about an hour early. I was also finding that at the end of the day, the cumulative stresses plus the pills wearing off meant that sometimes pain got out of control to the point where I would be vomiting from shock. Of course, this mean no pain pills staying down, so it meant a trip to hospital for a pethidine plus antiemetic shot.
My pain specialist then switched me to a 24 hour morphine capsule called Kapanol. (I don't think it's available in the US, which is why, under current legislation, I will not be able to visit you guys.) Since switching to Kapanol, I've had hardly any emergency dashes to the hospital to stop vomiting and shock.
I function. I do more than function, I can keep going and get so much done, but if pain gets out of control (if I get diarrhoea, for example) then I am like the Tin Man in Wizard of Oz, and I freeze up. Not from arthritis, this pain is neurological and muscular.
Over the years I have needed to take more. Your body does 'acclimatise' to the opiates and it takes more to have the same effect. But also, my pain has increased. But by only increasing my dose according to need, I'm not getting the side effects.
An important trick - never try to completely eliminate all pain. You still need to FEEL. To wipe out all pain takes you too close to the 'high' you MUST avoid. However, there is another sort of high which is the cessation of pain - you may also find you sleep, at least at first, purely because of the accumulated exhaustion the pain has caused over time. Take away the pain - and the fatigue hits you like a hammer. But once you've caught up on your rest, and you maintain control over your pain, you will (or should have) as much energy as the rest of your body permits.
So, to summarise -
1) never try to eliminate ALL the pain.
2) Make sure a pain specialist is overseeing it all.
3) Don't let the pain get out of control; instead, take what you need preferably just before you need it.
4) Be prepared to vary the dose a little as your pain varies. Make sure there is wiggle room to lower the dose on good days, for example. But KNOW YOUR BODY.
Dr K uses to say, "We'll get you well first, then we'll get you off the morphine."
But over the years I've demonstrated to myself, if not to him - when I'm not in so much pain, I don't take the pain medications.
I don't consider myself an addict, because I don't take it to get high. It doesn't interfere with my ability to function - if anything, it makes it possible for me to function because it gets my pain under control. I do get anxious if I'm cut off from my supply of morphine, but it's because I don't want the uncontrolled pain.
Yes, my body is habituated to it. That will happen. It's unavoidable. If I don't take it, I get withdrawal symptoms. But frankly, withdrawal is no big deal, there are medications to handle it easily. Withdrawal is much easier than the pain. But I don't think I have anywhere near as much in the way of problems, as an addict stopping their drug.
The danger signs to watch for - when you want a lot more, too soon. Analyse why. If it's because you're genuinely in more pain, you need to talk to the doctor in case the extra pain is due to a change in your condition.
Because of the volunteer work I've done and the self-help groups I've been in, I've known a lot of people with chronic long-term pain and heard many different ways of managing it. Some people use alcohol - it's a fast way to become an alcoholic, I've seen. Some use painkillers, with varying success. For every person who I think had an addiction problem, I've known maybe fifty who did not.
I've been on morphine now for about 12 years. At first I was on it and off it, as pain levels fluctuated. I had no trouble stopping it when the pain eased. But the pain hasn't been good enough for years now, for me to stop taking it.
Marg
I've taken note of all that you wrote & in fact will be copying your response to my computer. I know the next step will be a pain management clinic. I've never medicated myself to the point of absolute no feeling ~ that's just not me. 
